Support thread for all parents with reflux babies...

[PosieParker]

Just thought a pooling of ideas would be useful. Any ideas about meds, symptoms, coping strategies, things to make a baby quiet!!

Symptoms:

Arched back and crying/screaming after feeding
Fussy on/off breast or bottle
Frequent feeding
Little sleep
Constant crying/screaming

(please add)

Meds:

My memory is a little rose on this and I can't remember

Coping

SWING,
pushchair walks
accepting help
Sometimes putting your baby somewhere you can't hear them whilst you have a large gin cup of tea.

Well.......we gave DD antibiotics for his sore throat and unbelievably as of today he has started drinking again. 8 oz bottles. After 4 weeks of what I thought was an aversion but what I am now forced to conclude was some sort of infection. His face has kind of gone less puffy, so I am wondering whether the poor little chap has had the mother of all sinus infections all this time :( :(

Really pleased for you Narmada. Hope it lasts. DS2 stops drinking milk when teething. We've been to two hospitals today with DS1 and 2. DS1 will have overnight study for reflux (pH test) and DS2 will have sleep study re apnoea - good results really as we are finally being taken seriously.

Well done Ell re the request for action from the Towers. I look forward to hearing their response. If you need any backup, can you let me know how to contact them?

Thanks for your support re an info/advice event. Think some more voices would help. Still no word from on high - I just went to the home page and used the 'contact us' button - maybe there's a better way?
We're also on antibios for a throat/chest/ear infection. Day 3 and we're back on food, having not been bothered for a while, and me thinking the weaning thing was collapsing again! Fortunately she still took milk so no real harm done, and ironically sleeping much better. Nice new doc at GPs commented on how good she was - I just shrugged and said 'she has reflux, she's used to feeling crap'. Then realised how sad that is...
Still, not going back to a dark place - she's on the mend, eating better and we've all had a couple of hours sleep, heyho!
Best of luck with the hospital tests Bethylou, n glad yours is back on milk Narmada - hope we're all back on an upswing...

Hi everyone. That is great news Narmada, hope DS is still drinking well. Hope the tests go well Bethylou.

Ellnlol we're on antibios for throat too, last Thurs DS started screaming at lunchtime then most of the night. In my sleep-deprived and reflux obsessed state I just assumed the reflux had suddenly got worse, but turned out to be throat infection. Tbh I was quite relieved, even though it's horrible for him at least treatment is relatively straightforward as opposed to the mystery and hocus-pocus that surrounds reflux!

After 2 weeks of dairy free I caved last week and had heaps of milk/cake/cheese for one day - interesting experiment as 72 hours later the reflux got v bad again and he broke out in spots. So back off the dairy for the foreseeable I think. And onto the calcium supplements. Does anyone know how often you should test to see if they've outgrown an intolerance? Am hoping this isn't too long term. Also does anyone know if there's any test you can do to diagnose this properly or whether it's just a matter of playing around with diet and seeing what happens?

Narmada are you thinking of starting solids soon? I think your DS is about the same age as mine. I'm optimistically looking on it as the next big hope and given all the doubt surrounding the official advice am thinking of starting at a v slow pace this week. Paediatrician seemed to think a good idea. Fingers crossed it doesn't just make things worse - not the result I am looking for!

Hi Ladies flying by for a quick catch up. I'm back at work now so free time has become even more scarce!!

Bethy at last you're getting somewhere..hope that the tests give you the information you want from them. Narmada sorry to hear that your DS has been poorly again and I hope he is on the mend now.

Hope everyone else is having a good time at the min

DS is not as screamy and the projectile vom stopped once he had more solids following last virus. He is still so hit and miss with food though. Anyone else find this?? He will sometimes just have two or three spoons of breakfast, same for lunch and possibly a little more dinner. I find it so hard being at work and not seeing for myself how he is eating.

My MIL is looking after both DS and Im sure she thinks I over react about things. I have finally managed to find a cup he will have milk from and at least he is sometimes having that now. We have got the healthy start vitamins to supplement as I really feel he's not eating enough...particularly as he never stops flapping!!

He lost weight for two weeks in a row so i had3 weeks off from the weigh in. He is now between the 25th and 50th centile having been on the 91st from birth to around 4 months. The dietician just said as he is also on the 91st for his length she would expect him to be more slim ?!?!?

He is still having purees, I am desperately trying to give him more textured food but he just sicks it back. Yesterday gave him a stick of cooked, soggy parsnip and within ten secs he had thrown up the dinner i had just managed to get him to eat doh!

I even feel like my trusty HV is starting to think I'm crazy. On top of his reflux his chest is still so very rattley. Been back to GP again and now have his 3 inhalers on repeat prescription. Gonna try to get hold of paed resp physio for some chest exercises and see whether GP theory re: reflux due to ariway blockage is the problem after all?

Have repeat gastro review on 28th but sure that they will d/c us.

Sorry to be on such a downer :( Sending lots of good thoughts to you all

Hi,

My baby boy is 3 weeks old, I'm feeling a bit desperate, is it reflux? Does it have to be diagnosed by a doctor?

He's very fussy when feeding (he's formula fed (Aptamil)) - kicks his legs, arches his back, on & off the bottle, feeds every 2 to 3 hours & takes over an hour to feed.

He's the windiest baby I've ever known! (I have 3 other DCs, so I should be an expert, but I'm not). I try to keep him upright for as long as possible after a feed but he projectile vomits after most feeds.

what can I do? does changing formula work? HVisitor suggested leaning him to his left - he is not impressed with this.

Help!

vi hello :) does he proj vom after most feeds or every feed? My Ds did this from the day after birth and it's so very scary not knowing what it is. I would advise you to keep an eye on him. If it is every feed and he is getting worse go to your gp as some babies can have a condition called pyloric stenosis where part of the stomach that should be open is quite open enough. Try not to worry though it's not all that common but I know from our experience that you have to monitor them. I think that some babies with reflux can have a cow's milk protein allergy so changing the brand can help but it needs to be done with advice from gp and hv I think. (Anyone want to clarify this? I bf both mine so clueless with formula sorry). It helped up to do small feeds very often although I know that's very much easier said than done. Holding upright is good, you could try a swing? My youngest loved the swing for a while. Btw if you think it's reflux it prob is reflux my gp still refuses to accept that diagnosis even though two consultants say so hope it helps a bit? Let us know how you get on

Hi Vi, sorry about your little one :(

Does he have anything like rashes, eczema, diarrhea, red ring around bum that doesn't clear with sudocrem? If so it may be a cow's milk thing and the formula you would therefore need is something like nutramigen or neocate.

Or it could just be reflux and nothing to do with cow's milk, but the wind thing makes me wonder about cow's milk being an issue too.

Second what ladybiskybat says about getting him checked at the doctors though, especially with regard to pyloric stenosis, which is commoner in boys but easily treated. Thinking about it, if you've got 3 other children I'm guessing that if it was a cow's milk thing one or more of them would probably have been affected as it tends to run in families.

Ah, thank you.

Interesting what you say about pyloric stenosis, Ladybiskybat, he proj voms (since 1wk old)after most but not all feeds, but I'll keep a check on it. I'll try him in his swing again. Bouncing on the birth ball with him on my shoulder at 2am seemed to work this morning.

Narmada - he's had the worst nappy rash for the past 3 days, nothing is working - not even my usual foolproof mix of sudocrem & metanium. the other dcs don't have cows milk allergy, but lots of allergys in the family.

I'll take him to the docs

thanks, its very helpful having more 'tools' to work with.

sounds familiar Vi . press for a referral to a paed with special interest in gastric. too many gps don't have the expert knowledge and confidence to deal with this type of thing properly. you don't want to be faffing about with 2mls of ranitidine, which is probably going to do bugger all.

Hi to you all. Have to fly after a ridiculous day but couldn't lurk without a post to Lunatic.

Don't blame yourself-it is so common and as far as I know there is nothing that you have done to affect this. I understand that reflux is particularly common in prem babies.

I wouldn't leave it more than a week before going back to the GP (and keep trying until you get the answers you need-don't take any bullshit). Unfortunately, you may find that they can't prescribe much else until your LO reaches 10lbs (or that's what happened with us).

I'm so sorry you've had a rough time just to get to this stage and that it is now proving to be less than plain sailing. Accept all offers of help you get and do try the swing again. Read the advice in the first few pages of this thread as I think we've pretty much shared all the advice we have there. Have you tried a babybjorn to share the weight across your back whilst holding him upright? Keep coming back here to share your thoughts - lots of people will be able to sympathise, if nothing else.

Hi all, this is my first MN post, a friend on another forum sent me a link to this thread and I just burst into tears reading it.

My small person is nearly 5 weeks old and has pretty much all the symptoms listed. My mum kept tellingf me it was normal, so I was getting so down that I wasn't coping.

A quick summary of our position:

I'm a first-time mum, rushed into hospital at 37 weeks with pre-eclampsia, and Sam was born at 37+1. We stayed in hospital for a week as Sam was severely jaundiced and my blood pressure wouldn't come down. He was breastfeedng, but they made me bottle feed so they knew he was getting enough fluids. He refuses the breast now :( At the moment I am expressing, but I'm not sure how much longer I can continue. I'm Type1 diabetic, and pumping (or BFing) is making my blood sugars really hard to manage. With the reflux to deal with I'm lucky if I get to pump in a feeding cycle, and quite frankly the 20 minutes that it takes could be better spent sleeping, or getting dressed or feeding myself . Each feed just merges into the next by the time he has fed, been sick, been changed, cleaned up and I've pumped.

We've been put on Gaviscon, but we've had a real trial getting it into him. He spits it out if we try a syringe, and he feeds quite slowly so by a 1/3 of the way through a bottle the milk has got too thick for him to drink. we've now started mixing it into a small amount of EBM in one bottle, which he manages to get through, but then we have to use a completely separate bottle and teat for the rest. If I try and just add the plain EMB into the gaviscon bottle the teat gets blocked and he just sucks and sucks and sucks.

He has at least one projectile vomit each day, and brings up small amounts regularly. He is SO incredibly noisy, wheezing and grunting all the time. He is starting to get bags under his eyes as even when "asleep" he is so disturbed with the arching and writhing, and of course now his poo has hardened up on the gaviscon - and he already hated pooing :(

I try and hold him up after a feed, and then prop him up if I need to pump (now - typing one handed).

Feeding is becoming a real battle. He screams and fusses and brings up sick while feeding. I have tried witholding the food and trying to calm him first but he went purple and stopped breathing he got so upset, so we have to battle through. He was taking about 110ml at each feed, but now I'm lucky to get 2/3 of that in him before he gives up. So feeds have gone from 3-4 hourly to 2ish.

I just feel like I'm not being a mum. I don't get to play with him or have "nice" cuddles. I don't have time to keep trying him on the breast. I'm lucky if I get dressed, let alone have a shower. Yesterday I forgot 2 lots of insulin and my BP drugs and made myself ill. My lunch wa at 3pm -at McDonalds drive thru as the car zonks him out for a bit

Any advice on spreading out the gaviscon? When he doesn't have it he is often sick, and very unsettled even if not, and I end up holding him the whole time. But he has more than 6 feeds a day. Don't know whether to give 6 in a row to build it up, or sread out, or even give half a sachet with each feed.

hi, saw the gp last night, but feel a bit fobbed off. she says its not cows milk allergy, but thinks it might be reflux & wants me to see how things are in a weeks time, then see my hv, who can perscribe gaviscon if necessary.

(no caps, as jiggling lo) re: nappy rash - gp said all babies get it, can't perscribe anything better than what i'm using (sudocrem/metanium), she's seen worse (ds was screaming throughout, his bottom was bleeding)...

i should have been more assertive, but am so knackered.

sorry to hear about others with unhappy dc's.

Lunatic and Cobweb, sorry you are having to go through this.

Don't blame yourself, Lunatic, it's not your fault. If you think Gaviscon doesn't make much of a difference after a day or two, go back to your GP. IIRC it didn't take long for it to make DD better once I got it into her.

Cobweb, would mix-feeding be an option? Your DS would still get all the goodness from BM but it would give you a chance to get some rest or eat - it's hard enough without being completely sleep-deprived, hungry and, in your case, volatile blood sugar levels. Do you have to change him every time he is sick? DD is never without a bib and a muslin to protect her clothing. We've nicknamed her Jesse James because the muslin works best when tied around her neck bandit-style ? It means we usually get through the day without a change of clothing before bedtime.

I posted my method to get DD to take her Gaviscon last night in Lunatics thread but thought it might help others if I posted it here, too. I also forgot to mention a couple of things:
I only use 5ml of water instead of 15ml, it means it's only one syringe-load instead of three. In the beginning, I had her lying on her changing mat and gave her three or four drops at a time and made a big deal of it every time she swallowed it with lots of cuddles and kisses. It wasn't quick but it meant that most of it went down instead of being spat right out again. After three or four days, she opened her mouth wide when she saw the syringe and started to enjoy the process. I gradually increased the amount I squirted into her mouth. Now it takes less than a minute and she takes it sitting in her bouncy chair. I sometimes give it to her before a feed when I think she'll fall asleep during the feed.

She still spits up a lot sometimes, but at least she's not in pain anymore.

WRT sleeping, DD has been sleeping on her tummy since she was five weeks old. We got a breathing monitor but hardly even bother with it anymore (she's 15 weeks now). I know it's against the recommendation, but apart from the fact that she woke within 10 minutes of being put down on her back, I don't think all the grunting, wheezing and especially the choking were good for her. Until a few days ago, she slept between 5 and 6 hours for her longest stretch at night (I think she's hit the 4-month sleep regression, though, as she's waking every two hours again). Before I decided it's okay to let her sleep on her tummy, neither DD nor DH and I were getting much sleep at night and we were all reaching the end of our tethers. She is much happier now that she's not knackered all the time anymore, and I'm convinced it's saved my sanity.

FWIW, it does get a bit easier with time. DD has times in between growth spurts when her sphincter seems to be working the way it should and she doesn't even need meds to keep her milk down. Of course then she grows and it gets worse again, but it's nowhere near as bad as it was between three and six weeks. Her weight gain is still very slow, but my HV says as long as she's gaining weight and there are no other concerns, it's fine.

Oh Vi. SO sorry. I think GP is talking bollocks. How does she know it's not cows' milk allergy? Is she an allergist? No. Is she a paediatric gastro specialist? No. And as for the whole nappy rash thing - well that sounds like bollocks too. Is GP a dermatologist? No. We see a paed dermatologist at Great Ormond Street and DD gets prescribed things for her rash. Is there another GP at your practice who you could see? I know this isn't particularly helpful, and I really know that you did your absolute best at the GP's (and God I know how hard it can be when you are at the end of your tether and knackered and are faced with a HCP who just doesn't get it), but I think you really need to get that referral to a paed gastro specialist. Do you have health insurance? I think it's often easier to get a referral if you have and your GP is being arsey cos they then can feel like they have got rid of you and don't worry about "wasting" NHS resources, as they see it. Can you google and come up with the name of a suitable paediatrician who is expert in gastric stuff in your area? Another way round it might be to book an initial private consultation with a gastric paediatrician and then if he/she feels that your DC does have a problem and needs this specialist input he/she can write to your GP and ask that you be referred to their NHS clinic. You could discuss this with their secretary and find out if transferring to the NHS would be possible after an initial private appointment. I appreciate this may not be financially feasible for you. If you do decide to go down this route, for God's sake make sure you pick a specialist gastric paed and not a general paed - in my experience even the general paeds faff about rather having the experience and confidence to use strong enough meds/prescribe the (very expensive) but completely dairy-free formula. Good luck - am not always a regular on this thread. So PM me if you like XXX

Oh dear, so sorry to see more folks on here, hope you are mananging on the reflux rollercoaster .

Well, after a good week while he was on antibiotics for a throat infection, as soon as the ABs stopped DS stopped eating properly again, grrr. One thing I did notice is that while he was on the ABs, he did loads more poos than normal and seemed to get fewer tummy cramps. So.....I reckon, based on absolutely no medical knowledge at all that he may have some sort of gastric emptying issue, and that an unintended side effect of the ABs was that they sped up his digestion. Going to raise this with the dietician.

His sleep is still uuuuuuuuuuuuuurghggggggh too.

Hi everyone, gosh there really are a few new people. Sorry if I dont reply with names...but cobweb your post made me get a lump in my throat. I have thought the same. Not being able to cuddle your baby was one of the completely worst things for me. I know they scream, cry, wriggle, throw up and other things to many to mention but by far the hardest for me was not being able to have DS lay in my arms and having little snuggly cuddles. People used to ask to hold him when he was asleep on my shoulder and I mostly refused as it was the only time I ever got to cuddle him. I know this probably doesn't help but just wanted to say I empathise with you :( I hope all of you are getting somewhere with the GPs? Read over some of this thread you'll see you're not alone. Be confident and stand up to them. No one other than a mother with a baby who's had reflux knows what it's like to live with a baby with reflux! Sending love :) narmada how's Ds? Is he getting better? Has he seen GOSH paed yet?

Lunatic no it doesn't help when family say it doesn't seem normal. I had my auntie who is a midwife say it as she threw her cup of tea in the air when DS proj vom whilst feeding on the breast sending milk everywhere :( but at the same time it made me feel like I wasn't dreaming it all and I wasn't doing something wrong. Does that make sense? Also re dummy. Consultant advised us that it would help, stimulates saliva production to help neutralise acid, so persevere if he'll have it. No one told our DS that mind it just made him gag and vom. I second bethy's recommendation for a sling. I have a mothercare simple thing he sat in the front could face me or outwards and I honestly think id have gone mad without it. Worth a look anyway. At least means you have time with other DC as I found. I cant remember who was asking bout reflux and siblings...my DS1 I now think had some reflux but absolutely nothing on this level so guess you can have one without all this lark? What do others say?

Bookmarking. Thank God I've found this thread. 11 week old twins, one with reflux, one with silent reflux and a terrible cough which I was repeatedly told was viral and self limiting - he's had it for a month! On IG and ranitidine. Sick everywhere, nightmare feeding, sleep crap. Seeing paed with interest in neonatal gastro on Thursday (Dr.Soe, Essex) and can't wait. Also have a toddler who hates the twins and is cutting molars. When I try to sleep, all I hear is crying.

thanks, cardamom

Aaaaaaaaaaaaaaaaaaaaarrrrrrrrrrrrgh. DS has today managed to drink only 10 oz of milk since 6 am. It's taken me a total of 3 hours, and 6 instalments to get that much into him.

We are going to the GP soon in the hope that they will find another infection of some description.

What a miserable, stressful day :(